Join us for an epilepsy tweet chat

Boston Children’s patient recovers after surgery to treat his epilepsy

Join Boston Children’s Hospital and the Boston Globe for a Twitter chat on epilepsy, today, Monday, August 13, at noon.Tweeters from inside and outside Boston Children’s will take questions and discuss the latest on epilepsy treatment, diagnosis and how families live with the condition. You can sign up for a reminder and tweet your questions in advance of or during the chat to @BeWellBoston; use the hashtag #EpilepsyChat.

This Twitter chat was inspired by a recent Boston Globe story covering the evolving field of epilepsy treatment. The article featured two Boston Children’s patients who have had their epilepsy treated with new surgery techniques.

Roughly 1 in 26 Americans will develop epilepsy at some point in their life—more than will have autism, AIDS or Parkinson’s disease. Epilepsy medications can’t control seizures in about one-third of these patients, making surgery a better option in many cases. But surgery has its own risks, and does little to shed light on what causes the electrical disturbances in patients’ brains that trigger seizures.

The Globe story follows Paul Barney, Brian Manning and their families and doctors at Boston Children’s as they navigate the hopeful—and occasionally frustrating—world of modern epilepsy treatment.

Improvements in [epilepsy] treatments have come slowly, as scientists have learned more about the brain and the possible causes of epilepsy, which range from brain damage to inflammation.

New medications are beginning to arrive that address the brain’s over-excitation in different ways, offering hope to patients who haven’t had success with existing drugs… And doctors are getting better at understanding seizure patterns. Some people are more likely to seize in the morning, some in the evening, some while they sleep.

“If you know when seizures are most likely to occur, you can strengthen the defense against them,” said Tobias Loddenkemper, an assistant professor of neurology at Boston Children’s who recently controlled one boy’s seizures by increasing his medication dose in the evening, when his seizures were more frequent.

When Ian was diagnosed with epilepsy at age 3, his doctors said he’d outgrow it before he turned 5. But just the opposite happened: four months later, he abruptly started having much more frequent seizures, up to 40 a day. His memory deteriorated and even began to regress on a few developmental milestones. His parents were devastated, but thanks to surgery at Boston Children’s, Ian’s now back to where he was before the seizures started.

Growing up, Steve’s father had epilepsy. Medication controlled a majority of his seizures, but also left him tired and occasionally unresponsive for much of Steve’s childhood. Thanks to advances in epilepsy medication, Steve’s father has returned to his energetic and wry self, much to the delight of his family, especially his young granddaughter. Read their touching story here.

Gwen and her epileptologist, Blaise Bourgeois, MD, after her life-altering surgery

Finding the elusive electric impulses at the core of epilepsy isn’t easy. Today neurologists use an arsenal of tools to peer inside the brain and pin down the source of seizures. This was the case with Gwen, and the Boston Children’s doctors who found and removed a pea-sized malformation in her brain, leaving her seizure-free.